Of heartbreak and hope

Hello my darlings. Firstly I want to tell you what is happening with me, after the last couple of posts have found me in a scared and scattered place. I had my second cycle of my new chemo regime last Monday, and came home attached to my phallic friend the “cock bottle”, determined that the night was not going to find me in a fit of frustrated rage like the time before. Let me tell you that I have now accepted that infusion day, and the long dark night that comes after it is going to be a write off every time…I realise now, and I am prepared for it. There is no way to describe it really, a general feeling of arse, combined with this horrific sweating around the neck, and feeling like you are being choked by the lines and tubes coming out of your chest….it’s just not good. However, I took my drops of calm, laid my bottle between the bed frame and mattress, and did manage to drift off to sleep. The first time I woke I was saturated around the neck and claustrophobic, and the spot where the needle went into my chest felt hot and stingy, and I nearly lost my shit, but managed to head it off at the pass with a bit of deep breathing, and more drops. I got up in the morning and had a bath, which in itself was a feat, with everything attached to me (it’s the collection of little things that can overwhelm)…something I didn’t even attempt the time before as I was too depressed to give a crap how I smelled. Then, I got dressed, put the bottle in my pocket, and kind of hit the ground running. I’m winning the war with my head. I can do this, I can have quality of life while being on chemo for life, and for me that is at the heart of all that matters. Here I am, day 2, bottle still on:

About 3 weeks ago I received a very beautiful message from my friend Denise, and I am going to share it here with you for a number of reasons:

“I am just SO happy for you..I could cry. When I first met you Julia, I was struck by your energy and how brightly your light shone out of you. I was in awe then. When I learned you were also extremely compassionate and caring AND to top it off…with above average intelligence I just had to tell my Mum all about you (which is possibly a little weird). When I heard about your “condition” (lol) I couldn’t believe you wouldn’t beat it. I guess there’s an acceptance now which I shove right to the back…that life is unfair that way. I’m of the opinion that you were a bit of a gift from above. They don’t make people like you Julia. I’m abit quiet I know…I guess I’m guarding myself a little…BUT I know your very busy and you should share every bit of time left with those closest. Just know that I’m watching proudly from the boundary. There has been some fairness in this after all. People like you live on in other people being inspired because of you and by you for years. I hope you believe you are so special. I knew it from the beginning. I don’t mean to sound like such a suck just showering you with flattery. I mean what I say. The impact of your life will not only be felt by close friends and family but because of the book along with your outgoing nature and the brilliant flame in you, it will grow into millions…AND you deserve every ounce of joy you can muster. I don’t believe life has always been so rosy for you…you’re a blooming beauty now my dear. Give it all you’ve got …you beat them all. Love to you and yours xx”

I was struck at the time by so many things, the beauty of the message, the time people take to tell me what I mean to them, astonishment that I can touch people so deeply, how lucky I am to have such wonderful people in my life. The other thing that struck me was the sheer unselfishness that Denise shares with every other one of my friends…I have lost not a single friend to cancer, even though I can no longer be the friend that I used to be for people….I don’t always have the energy to socialise, I don’t always have the emotional strength to listen like I used to, and generally what is given to me in peoples time and energy, I can no longer match and no longer even attempt to. I hate it, but it’s not realistic to think I can do this. Yet everyone understands. I felt sad at the time that Denise had felt she needed to watch me from the sidelines, and I vowed then to change it. Bit by bit. I was going to spend more time with my friends…as soon as the busy times died down with the book. As soon as I got my head around the new chemo routine. There was time to put this right.

But, do you know what, there WASN’T time. I am still here, Denise is not. Last Friday she had a massive heart attack and she passed away on Sunday. She was a funny, compassionate woman, a talented artist, a brilliant mother, daughter, and grandmother. I’m fucked if I know where the justice is in this world that she is no longer with us. Goodbye my friend, I am so sorry that I never had a chance to see you again.

My life has also been touched in this past week with the deaths of two very young women and mothers, to bowel cancer. The beautiful Kim, mother of three very young children and only 30 years old. I was only just starting my journey of getting to know Kim, as she had only been diagnosed a few months ago. An operation designed to reduce her pain, an operation I have had myself, caused a post operative infection that took Kim swiftly from her devastated family and friends. The shock, it just sucks the breath out of everyone. Then, just a couple of days ago, my beautiful friend Amanda. Amanda was brave beyond belief, one of the most positive people I have ever known. Even a couple of weeks ago she was still talking about how determined she was to beat this, for her boys, for her much loved family. We used to chat all the time by PM and got to know each other really well, and it has left a hole in my heart that she is gone.

I want to end on a more positive note, so let me tell you about my friend Bekkii. We went to Huey’s Diner to celebrate fathers day a few weeks ago, and it was just after our appearance on 60 minutes aired. Bekkii came over to our table and introduced herself and gave me a hug, and said that she had happened to see me on 60 minutes despite the fact that she never watches TV, and she had been thinking about me a lot, and then amazingly, there I was right in front of her! Turned out that Bekkii was the singer in the band that day, and she dedicated a beautiful Eva Cassidy song to me. There wasn’t many dry eyes in the whole diner right then. It was truly one of the most special moments I have had on this crazy ride, and there have been many. So, Bekkii and I connected on Facebook and she sent me lots of beautiful caring messages and we worked out that we know heaps of the same people and used to hang out in the same circles 25 years ago when we were both youngsters! Sometimes you get to know people really quick…it’s like your hearts can see each other or something, and that was me and Bekkii. However, nothing prepared me for her messaging me and telling me that she was coming to stay and look after me and the kids during chemo week! We’d only met once! Somehow though, I found myself agreeing to this! What a lovely revelation it has been. All week I have been nurtured, fed three meals a day, able to go to bed when the tiredness has totally felled me a couple of times, without any of the awkwardness I would normally feel about someone looking after me, someone staying in my house…sometimes you meet people and it’s just comfy right away. Thank you sweetheart for the care and making me feel so loved!

Plans afoot for lots of working and writing over the coming week…including another blog for you sometime soon I am sure.

11 Comments on “Of heartbreak and hope”

oh Julia, I feel so emotional when I read your blogs. You are truly an inspiration. Your friend Bekkii is also one in a million, you’re very lucky to have someone like her in your life. Best wishes to you both.

Hi Julia ,I just wanted to say you are the most wonderful caring inspirational person I have every met , I went thro bowel cancer twice Quite a while back and then 2 years ago ovarian Cancer following 5 1/2 hr surgery. , I read your blogs as if it was my bible , I have cried and laugh with your stories , you have a wonderful gift in writing and telling your stories and when I start reading I can’t put it down I then find myself checking fab for the next blog to find out how to are going , I am so sorry for your losses , in the last few weeks of your friends they are now looking down on you being your angels , sending loves and hugs your way xxxxx

Dear Julia, life does suck sometimes doesnt it so sorry to hear about your lovely friends passing away so suddenly. I wish l could fix this dreaded disease called cancer, l wish l could say hello to my brother in law and his brother in heaven, both in their mid fifties, both firemen, husbands, fathers and grandfathers l just “WISH” and if l wish hard enough this dreaded disease with the new treatment will leave you and your family. I know you will grow old with your husband, see your fairies off to high school and uni and watch them walk down the aisle and one day hold some new little fairies who call you Nan. “I JUST WISH” all my love to you and your familyJulia 💛💜💙🌷🌻🍀🐝🐞

Dear Julia, my heart goes out to you at this time of loss. You have found an earth angel in Bekki, God bless you both. You continually amaze and inspire me with your loving courage and honesty with your feelings, as you keep it real. Thank you for all you give and I wish a thousand fold returns to you. Light and love. Xxx

I just discovered your blog via Facebook and dropped to the floor when I read your comment about my friend Kim who just passed away last week. I’m flying to Melb on Tuesday to attend her funeral and can’t believe the confidence of you writing about Kim and her quick decline. I just published a post yesterday about losing her and how much I miss her.
Wishing you the very best of luck with your journey and recovery hun xx

I read your post, Kim’s friend Carol sent it to me. It was beautiful. I am so sorry for your loss, and wish I had a chance to know her better. We have EB forums in common too..never realised Kim was on there, I have been active there since 2000 would you believe, but not really in the last few years.

Jules, it is terribly difficult to farewell your friends so close and who have been there for you since your diagnosis and before that. One of my close besties had a cancer threat and I really couldn’t imagine life without her so I can only imagine the grief. Denise was absolutely right when she said you are inspiring. And for me the inspiration comes from you being your most honest, truest self with all the confidence of a non-fuck-giver. That’s contagious and it reminds me of possibilities, and the richness of life right now, not in some mythical “when I get around to…” in the future. And I’m sure I’m not alone here in saying what you have said and written and how you are being, has changed the whole game for me, and continues to do so. Your posts and blogs remind me of the utter preciousness of life RIGHT NOW, that perfection never happens, that “try it an see” is a recipe for adventure, and that nobody has to stay broken. Your perspective is such a gift, and I cannot tell you how grateful and glad I am that you share it, regularly, honestly, insightfully and articulately, and often poetically.
Short version: you rock! Keep on rocking, chica!

Hey beautiful, another time of swings and roundabouts. What never ceases to amaze me is that you remain so thoughtful of others, so grateful for the gifts people can and have given you. You just rock xxx

Wishing you much love and strength for what sounds like a horrible week.
But I’m so glad you’re here!
I found your blog yesterday, bought your book online and spent all day yesterday reading it. You took me on a journey, from the everyday joys, the fears, trepidation, ups and downs.
I’m only a stage 3B bowel cancer, so I can’t fully identify with the stage 4 journey (actually I hate the word journey now), but dang, we have so much in common. What chemo course are you currently on – Folxfox6, Folfiri?
My mum also had a mental illness – we grew up with her being committed to a psych ward every other year. And your blog describes exactly how I feel about bowel cancer, the constant waiting for the next diagnosis/treatment option, trying to work out the meaning of life and how to live it as best as we can.
I’d never thought of my chemo pump as a cock bottle. I thought it was more of an antique walkman I was wearing to be trendy.
And I’m so glad to read that someone else had the eyelid spasms – it is so weird stopping in the middle of the street, waiting for my face and lips to get back to normal, trying not to look like I’m winking at strangers.

The main thing I’m taking away from you is “carpe diem” – seize the day.
There is no time to waste, waiting for everything to get fixed/finished before you do stuff.
Limbo sucks.
Enjoy. Love.